Milestones

It’s November 2, 2017 which means it’s been exactly two years since we met James and he became our son! Happy Family Day sweet boy!

James has changed physically and emotionally in numerous ways. He’s several inches taller and several pounds heavier and he’s flourishing in Kindergarten. He’s receiving OT services at school and privately to help him as he rehabs from the major arm/hand surgeries he’s undergone this year. We will see his surgeon next week for his 3 month follow up, and to discuss and plan for the next round of surgeries for his right hand which we hope to start in January. The hardest part is retraining his brain to use his fingers in a new way, and trying to overcome the challenges of the contractions in his finger joints. They are considered “moderate” but they impact his strength and range of motion pretty significantly.

James loves to play with Andrew these days. They are constantly building and playing with Legos, Nerf Guns and Minecraft. He loves to play and read about policemen and firemen and loves to sit and just look at books. He’s eager to draw pictures thanks to an amazing art teacher at his school who motivates and empowers the kids to feel confident in their abilities regardless of their skill level. He’s done much better with making friends this year and has one friend in particular at school that he has really connected with and talks about often. It’s such a joy to see his confidence grow and social skills develop.

James will be SIX next week!! He was such a little boy, almost like a toddler, when we met him. But he has truly blossomed into this little boy who is growing up so quickly!

Milestone #2 – 

Tomorrow, November 3rd, marks four months since we met Emily and she became our daughter!

A week ago today she had surgery to remove a good portion of her lypomyleomeningocele, release her spinal cord which was being tethered down by this lypo, and then put her spine back together. The Lypo is a benign fatty tumor that formed in utero after the disruption of the formation of her spinal cord so it’s a form of spina bifida. The neurosurgeon lasered off the fatty tissue as much as possible, but there are a lot of nerves emeshed in it and so he couldn’t remove it all without risking further nerve damage. A neurophysiologist was monitoring and tracking nerves throughout her body during the surgery and they did note some minor impact to her left foot. It’s concerning in the sense that her left leg and foot are her strong one (her right foot is clubbed and the muscle in her right leg is almost entirely atrophied right now) but so far we are not seeing major symptoms. She does complain of pain from time to time in her feet and she is still very newly post-op so it’s hard to know if some of her mobility struggles right now are related to that or her back healing. But overall the surgery went very well and her incision is healing well. We just have to keep it clean and monitor it for infection or spinal fluid leaks. She handled the 48 hours  flat post-op so much better than we expected. We pushed to schedule her on Morphine right out of the OR as we knew she doesn’t have the language to communicate about her pain levels and location. She slept for almost the entire day after her surgery. By Sunday she was sooo ready to go home, but her body wasn’t. She couldn’t bear weight to walk on her on in the morning, so the team said one more day. We worked with an acute PT and got her going and by Monday morning she was ready!

 

 

 

 

 

 

 

 

We have to watch her carefully at home. She needs assistance sometimes and definitely fatigues easily. She’s been taking long naps and prefers to sit most of the time. She can’t “scoot” like she used to, or bend over to pick things up or get up from a squat position without holding on to something and grimacing. She’s as determined as ever though. We hope to get her in for a PT eval soon and start that on a weekly basis ASAP. We’re also sorting out next steps for treating her club foot with the Ponsetti method which involves serial casting for about 6 weeks and wearing a pretty intrusive bracing device overnight for several months. It’s our goal to have everyone cast free for next summer so we can enjoy the beach and swimming as much as possible.

I had really wanted to blog while in the hospital to continue my “Bedside Reflections” series, but unfortunately I accidentally left my laptop at home. But I want to share this briefly…

Emily is really scared of doctors and nurses. She cries as soon as they come into the room and gets really upset. Like every. single. time. Doesn’t matter if it’s a routine office visit, or an aide just trying to take vitals in the middle of the night while she’s sleeping. Just when I thought she’d settled, she’d hear the velcro of the blood pressure cuff and she’d start crying again. And in some ways I don’t blame her. All these strangers, all wanting to touch her and talk about her. No. fun. But we had one nurse who decided to go above and beyond. To not just tolerate it or try to “stay away” and not make her upset. She recognized her fear, recognized that she has more medical stuff ahead of her, and she took responsibility for Emily’s feelings about medical staff and started being really intentional about winning her over. She was creative and playful and engaging without overwhelming her. For example, she recognized that the gloves were an object of fear. So she made a funny face balloon out of them and turned them into something fun. She then advocated for her with all the other staff and got Child Life involved to help make things fun. From then on, every person who came in knew that they need to put in some extra effort to help our girl not feel so afraid. And it was such a gift. Such a relief. It didn’t take long, and didn’t take much, before Emily was clearly willing to offer some trust and pretty soon her whole demeanor around this nurse changed, and she started to let down her guard with the other nurses and aides too. This nurse, Carol, was a blessing to us and I’m so thankful for her wisdom and concern, and frankly – her ownership of her patient. She saw beyond the diagnoses and charts and med schedule, and she saw our girl and she didn’t run away in her own fear of not knowing what to do with a child that cried every time she walked in the room. She fought for her trust and she earned it. And in doing so, she encouraged me to speak up to future medical staff and push them to do the same. Because yes, it’s asking more. And yes, her medical stuff is the priority. But her emotional well-being is equally as important and since we’re not going to be strangers to medical staff, it’s important she feel as okay as possible about it all. Nurse Carol has set the bar high and I hope to hold others to it going forward. A huge thanks to ALL nurses for your kindness, strength and perseverance in what is often a difficult and thankless job.

 

 

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